I want to start out by saying I think you are a remarkable political satirist. You are funny, intelligent, and I often return to your Youtube channel these days when I need to smile and I feel like I need to smile a lot these days, because the world feels like it’s imploding.

I was watching your coverage of the RNC this morning and during your piece you were discussing why so many of the Republicans have failed to appear at the convention. There was a graphic behind you of “made up” reasons for not being able to show up and one of the reasons on the list was “fibromyalgia.” I’ve sat with this image all day and finally decided I wanted to bring to your attention (or your writer’s attention) that, as a person who struggles with fibromyalgia, it is anything but “made up.” I would like to hope that this was an oversight and that the intent was not to imply that people with fibromyalgia are not suffering from a fictional disease, which is why I wanted to share a little bit of my story with you.

I was diagnosed with lupus 10 years ago and fibromyalgia 3 years ago. My reaction to the fibromyalgia diagnosis was incredulous. I am a master’s educated, licensed social worker and my exact words to my rheumatologist were “Isn’t that a made up disease?” I had to combat a number of personal biases and misconceptions that I wasn’t aware I held until after my diagnosis. I actually had friends who were medical & mental health professionals telling me that the diagnosis had to be wrong because I did not fit the “fibro” personality.Strangely enough, the “fibro” personality they described mirrored the diagnostic criteria for Borderline Personality Disorder quite closely. I researched my diagnosis and found that fibromyalgia impacts 2% of the US population (about 5 million people) and that it impacts women more than men at a ratio of 7:1 (http://www.cdc.gov/arthritis/basics/fibromyalgia.htm).The disease changes the way the brain perceives pain and risk factors include physical trauma, viral infections, emotional trauma, PTSD, certain chronic diseases, obesity, and genetic predisposition. So being alive and having a vagina pretty much puts you at risk for this horror show. There is no cure. Physical pain management is the name of the game, along with exercise, and learning how to re-calibrate your mental health to deal with chronic pain.

What’s awesome is that the first question a doctor asks when you tell them that you struggle with fibromyalgia is “Are you depressed?” Now, I’m a mental health professional, so I know how to answer that question and advocate for myself. I know that saying, “I feel like my body is hosting a nightly show of Les Mis, with my muscles as the Bastille and my pain receptors as a bunch of pissed off French peasants, what do you think?” is not going to earn me any points. It does make my primary care doc laugh, which is a plus, but after we’ve all had a chuckle I go through my own version of the Beck Depression scale and allow my husband to sit in the room and talk about how not depressed I am because, as horrible as this is, I know that doctors are going to take my concerns seriously if I have back up from a man.

Plus, I’m lucky, I was diagnosed with a “real” disease first, so I get a little slack from the doctors, but there are a lot of women out there who don’t have the schooling and support I do and don’t know how to advocate for themselves. They live with horrible chronic pain and are told by doctors who don’t understand the disease that they need to “lose weight, exercise, and work on their outlook” and they will be fine. They get prescriptions for pain medications that develop into addictions because no one explains their disease process to them and they don’t have the time, the energy, or the will to do the research. They feel like a failure when they can’t get it together and like a crazy person when people say “I don’t know what you’re complaining about, you don’t look sick.”

Anyway, I wanted to write you a letter to let you know that fibromyalgia isn’t made up. It’s very real and it sucks, big time.

Thanks!

Jenn Kowalski

@jkkowalski

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Published by Jennifer K Kowalski

Jennifer K. Kowalski is an author whose poetry, creative non-fiction, and fiction explore the intersection of gender, sexuality, and sexual expression. Her sex-positive, blended-genre erotica is published as Anne Stagg on Bellesa.co. Jennifer also contributed feature articles and a regular column to the arts journal dialogue Magazine and poetry to Tar River Poetry’s 25th Anniversary Edition under her family name Jennifer Ralph. She holds a Master’s in Social Work and is a vocal advocate for the creation of physical and virtual spaces that affirm gender-expression and sexuality without shame or apology. Visit https://annestaggwrites.wordpress.com. Follow her on Twitter @jkkowalski and @annestaggwrites.
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